Sioux FallsRapid City

Realizing Potential

MENKES SYDROME
Tristin was a small baby weighing only 2 pounds 14 ounces at birth.  At two weeks old, Tristin was diagnosed with Menkes Syndrome, a copper deficiency. His hair was kinky and brittle; his veins were spiraled and twisted.  His parents, Natalie and Andy, were told their baby boy’s life expectancy would be a couple of years.  They knew the heartache of losing a child so young already; Tristin’s older brother, Christopher, passed away when he was 9 months old.  Because there was a family history with Menkes Syndrome Tristin was allowed into a research program where he received copper injections every day for 6 years.

CHALLENGES

Throughout his early childhood Tristin’s parents tried to keep him at home but it would only last a few days before he would have a medical emergency ranging from pneumonia to bleeding in his stomach and he would spend months in the hospital between short stays at home.  Because of the care their older son received at Children’s Care Hospital and School in the final months of his life they knew Children’s Care could meet Tristin’s needs better on a 24-hour basis than they could provide at home.

POTENTIAL
On Mother’s Day, when he was six months old, Tristin came to live at Children’s Care.  From the beginning, Tristin’s potential was looked at, and not just his projected life expectancy.  He couldn’t move his head so therapists used a bag of beans to prop his head up and strengthen muscles.   Tristin can now not only turn his head but also sits up to see the world around him.
“When we are sick we can’t come to visit.  But we know Tristin still gets excellent care and receives many visitors.  If he was at home he would be exposed to germs and the same would be if he attended public school.  Children’s Care is able to limit the exposure,” his mom, Natalie explained.  When the family has taken him to various other medical facilities around the country the staff always comment on how well cared for he is at Children’s Care.
Tristin may never learn to write his name, talk, or read a book, but he does communicate.  “We know he’s in there but he just can’t tell us,” said Grandma Rose.  Tristin can make simple choices and is able to use an assistive communication or “switch” device, facial expressions and some vocalizations to tell family and staff what he wants.  He is now able to play baseball in his wheelchair on a Miracle League team.  He is a happy child who celebrated his 10th birthday in October.
“We haven’t found anyone else who can meet Tristin’s medical needs or provide him with such a nurturing environment of learning and care,” Natalie says with a tear in her eye.

If you would like to help other children like Tristin have a chance at life, please click here.

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"It's so hard for a parent to place their child in a residential program. The only way I can do it is because I know everyone at Children's Care loves and cares for my child just as I do."
– Sara S., Parent